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Tuesday, April 27, 2010


We have met some lovely families here and the staff are wonderful. One Dr even brought in a bouncy thing to hang off the door for Poppy and some toys! Everyone is so welcoming. It's also nice to have banter with the Higgins family, whose daughter is in for round 4. It's hard to think that back in December we were in contact with each other and discussing Philadelphia or New York. We wish Robyn Higgins all the best as she prepares herself for her FINAL round of antibodies in 3 weeks time. It's going to be a strange place here when they leave!

I gave Lisa [Robyn's mum] a lift back form the hospital the other night.None of us realised until we got to the RM House that Lisa didn't have one of her bags. She phoned security and sure enough, one black bag was waiting to be collected - had been found in the car park. I gave Lisa a lift back down to the hospital so that she could be reunited with her bag.

When she checked her bag it appears that someone [ie, ME] had reversed over her bag as her laptop was broken and Tommy's game boy. OOPS! For an 11 year old boy, Tommy, you took the news very well! Sincere apologies to Lisa and Tommy. The thing was, none of us had realised we had reversed over anything! I just liken it to my man on the bonnet episode in Germany!! Long story, nothing rude at all!

The ch14.18 Antibody Treatment - Round 1, Day 2

All the same procedures as the day before but we all knew that although Jamie had tolerated the antibodies well, the next day could show more side effects. We were so relieved that the first day had gone well, we kind of forgot there was more to come! The second day saw Jamie in more discomfort, especially in the back and tummy and he used the morphine a bit more. He played in the morning in his room and by noon was sleeping. He slept on and off throughout the afternoon but the Drs and Nurses were in constantly monitoring and checking the vital signs. Any sign of a temperature needs to be dealt with quickly as the antibodies cause fever in some children. Jamie did spike a temperature by evening and the rash on his head was getting worse with blisters having formed and beginning to crust. The Drs kept looking at it and weren't convinced that it was Shingles because it had already crusted and was quite small. We had heard though that Shingles can occur after radiotherapy.

Jamie's heart rate was a little fast at times during the transfusion and then the cough appeared again. This time it occurred earlier in the day and he had several episodes of persistent coughing. By the evening one such episode lasted more than 40 minutes and was severe.

The Drs were called and they felt that this was an allergic reaction to the antibodies and decided to stop the infusion for 30 minutes and to administer morphine and Benadryl. Within minutes of the infusion stopping, the cough became much better and Jamie rested. They started the infusion again at a slower rate and Jamie coped well. They then turned it back to full flow and Jamie was able to complete that days infusion without too many other issues.

Days 3 and 4 were interesting and slightly panicky at times but I will explain more soon!

The ch14.18 Antibody Treatment - Round 1, Day 1

Jamie's nurse was excellent at explaining everything that she was doing and going to be doing. She very quickly appreciated that this was a special moment for us and that we weren't a mad family who get excited about a bottle of medicine! Ok we are a mad family and we did get excited by the bottle of medicine!

At 10.00am, the nurse brought in the bottle that has cost so much money. I looked at it and saw those all important letters and numbers - ch14.18 and I could have cried.

I thought back to the stresses of the past few months and all the wonderful people we have met along the way. The wonderful charity nights that we attended and the generous donations people have made had all come together for this moment. Thousands of miles away from home, family and friends, Jamie was about to start what we HOPED would be, his final phase of treatment to eradicate this thing forever. Just over a year ago, as newly diagnosed, we had began a somewhat tentative 'look' at other options, with this being one that stuck in our minds.

As the infusion started I reminded Jamie what they were for. We think of it [the antibodies] as being like 'Iron Man' who flies around the body to find baby blastoma. When he finds them, he lands on top of them and blows them up! Jamie is happy with this very simplistic approach and totally understands what is going on.

He was shown the Mighty Morphine machine and with the help of his pain chart could tell us when he needed to press the button. The morphine was going in automatically but he could give it another push when needed.

Jamie became very sleepy quite quickly due to the Benadryl. The antibody infusion was going to take 10 hours, 12 hours in total with the final flush. Half way through the first day, I noticed a small rash appearing on the back of his head. Drs and nurses monitored this and then later on in the afternoon, Jamie began complaining of pain in his tummy and back. These are both likely side effects. He pushed the morphine button and controlled the pain really well.

By 8.15pm the infusion was complete and Jamie had got through the first day!! The Drs thought he had coped really well but we still had concerns about the rash which had now gone lumpy with open pores. Jamie also developed a cough towards the end of the infusion and at 11.00pm was coughing so much that he was sick. He had more morphine and Benadryl and went to sleep.

He had a relatively good night with a few coughing fits. This is also attributed to the antibody.

Building up to the big one!

Mission complete, well almost!!! This is a novel in the making as this entry is so long but we want you to share with us that very special moment of starting the therapy and Jamie's progress during his first round of ch14.18 antibody.This is what your hard work has achieved for us.

There is so much to explain about what has happened during the past 5 days that none of this may be coherent or make that much sense!! I apologise!!!

I will try to start from the beginning, always a good option! Jamie was finally admitted for the 1st round of antibody treatment on Weds evening. We spent the afternoon in clinic getting labs done etc and also met up with a wonderful family who we met in our first week at the Ronald McDonald House. They were back in CHOP for an appointment and Jamie had so enjoyed playing with their children. It was so good to see them as they are genuine, kind people but unfortunately Jamie was in a really bad mood! After about 15 minutes he had become so tired and over excited that when I said "no" to a request [no time for the reasoning!] he kicked and scratched and screamed. People started looking but then I thought "hey, wait a minute, this child has had to put up with so much!"

So, Michelle and Justin, if you are reading this...I'm sorry that our rendezvous was cut short!!!

The room that Jamie had was fantastic, in fact the whole unit is amazing. How can I explain this...well we have moved to a totally different system of care and facilities. Not better - just different and it takes a bit of getting used to.  Jamie's nurses are also responsible for all his monitoring and administration of drugs and they provide round the clock care. They are never out of the room!! [That is no criticism by the way!!]

Once admitted and settled we had a tour of the unit. Wonderful facilities for the children which includes a well resourced and equipped play room with Jamie having his own Child Life Specialist who comes into his room each day to do activities with Jamie and even Poppy! They both did hand printing on his first morning!

The Ronald McDonald family lounge has all that you need to survive, coffee machines, large fridges and freezers and endless packets of Macaroni cheese to keep his Royal Highness Happy!!! Laundry facilities are an added bonus. Again, volunteers cook some evenings which leads on to the best bit...Room Service!! I kid you not... there is a booklet with everything there ranging from fajitas to hot dogs, burgers [I'll stay away from those, thank you very much!!] pasta, vegetables, stir fry, fries, breakfast things which you can order throughout the day!! You phone through when you want and it is delivered within 45 mins!! [Not free for mummy's though :(] On our first morning we ordered toast for Jamie and it wasn't enough and he kept saying "Can you phone it for me?!!"

Back to the first evening...Jamie had to be isolated because new admissions means that each child is swabbed to check for a particular virus. Until the results are through then your child remains in isolation. At least there are Play stations and computers in each room and enough space for Jamie to drive a fire truck in!! He was so excited to be here! A little bit of me was too but then the sick feeling kept taking over! He also loved his bed, one of those high tech paediatric beds with buttons and flashing lights so all in all very impressive until I saw or couldn't see, my bed! The brightly coloured sofa which I had thought considerate to mums and dads who want to chill if child is asleep, was actually 'The Bed!' I have to admit it was much more comfortable than I thought although I couldn't sleep on our first night here.

So Thurs morning dawned and I yawned...where had all the energy gone? I felt exhausted before this all began but Jamie was in good spirits until they began bringing in different medications to prep him. He eventually took what was needed and was so pleased with himself! It was from this point that the mutual admiration society was set up between Jamie and ANY Nurse that came in!! His Nurse for the day, Andrea, was fab. She adored Jamie, he adored her and so the story begins :)